WHATEVER

Sunday I got sick again.  Who knows what happened to me. I was pretty okay when I woke up.  I have been feeling confused for sometime now.  My neurologist is aware of this.  Hence the neuropsychological testing.  But, this was really crazy.  I also have been falling to the left a lot lately too.  No explanation for this either.  In the shower I became very confused and disoriented, felt like I was falling backwards.  Knew enough to get out.  Sitting on my bed I felt scared.  I couldn't get my words out.  Gary called my neurologist who was not on call and we spoke to the one who was on call.  A stupid idiot he was.  Asking me all sorts of questions I couldn't answer.  He finally said call 911.  Gary did.  I was in the hospital for 4 days.  They ran tests.  My primary care doctor came in.  He told me that the tests looked fine.  Nothing different on my MRI from June.  The CAT scan showed no bleeding in my brain.  Well at least I have a brain.  Because there are times lately I really think I don't have one.  My thought process is lacking most of the time.  Making decisions has become very hard for me lately.  Doing much of anything is difficult.  This illness has bankrupted my body.  This unhappiness is not simply the result of what this disease, illness, sickness, malaise" or WHATEVER is doing to my body. But the lack of what the "Specialists" can do to help me.  they tell me I am a "Science Project".  I have Antiphisiploid Syndrome.  My brain is a mess. My coumadin levels have yet to be stabilized.  It's been 18 months.  I'm in pain most of the time.  My body is experiencing paralizing fatigue.  I may or may not have Lupus.  Sometimes I do they tell me, sometimes they aren't sure.  So I was in the hospital for 4 days.  They were really nice to me.  Neurologists, My Rheumatologist, My PCP and the Staff Psychiatrist all came to see me.  They called in a Psych Consult because I cried a lot.  Heck wouldn't you?  Oh and my room mate was a 57 year old woman with Alzheimer's Disease.  How encouraging was that? Until now I have gotten up and went through my day with gusto.  Ignoring the pain and fatigure, I did what needed to be done. But now these confusion episodes have been happening more and more often.  I am afraid that I will be somewhere become confused.  When too many things are happening at one time I become very confused.

So I go for my follow up visits with my PCP and to the Coumadin Clinic today.  My Primary Care Doctor whom I love dearly tells me Gary was right to call 911 and if this should ever happen again to do the same thing. I ask why did this happen again?  We just don't know.  My doctors have taken to that familiar "Puppy Dog Head Tilt". He suspects this will occur again.  Until we get this straightened out.  Did you call your neurologist?  Nope, not yet?  Next week, I will.  Okay, see me in a month.  In my mind I am saying......  Who exactly is We?  Off we go (I'm no longer driving anymore.  For fear that I will have another episode and either kill someone else or myself. So my son drives me around.  Talk about grieving one's independence.) to the coumadin clinic.  We have some time in between so he wants to make a stop at the Mall.  I say okay.  I can handle this.  (Or can I?)  I have taken my Xanax.  Let's just run in so I can pick up a holder for my cell phone.  Okay I say.  I decide I will sit in the food court with a cup of coffee and a muffin.  There is no running in any more for me.  But he is my son and I need to try to keep some normalcy in his life.  It only takes 10 minutes.  We are fine.  We go to the coumadin clinic.  My levels are good.  But, Amy, my nurse practitoner says she hears me slurring my words.  We talk a bit and then she decides to print out another instruction sheet with my coumadin dosage because she too believes I will end up back in the hospital.  She tells me she will discuss the possibility of switching me from coumadin to lovenox injections.  That may help.  I have to go back on Monday.  I am not really happy right now.